Tests came back negative

Well I am back to square one. I have shared before that I had a serious car accident 19 years ago. I have 2 level fusion in neck and lower back. I fractured my right hip, pelvis, sacrum, head concussion, ruptured spleen and diaphgram.

A year after the accident I starting have leg weakness and not being able to walk. It has gradually gotten worse. I have been checked for ms years ago. Negative.

I just saw a new neurologist. We asked him if he had seen any cases like mine....he said yes but let's wait for test results. All test came back negative - they were all for ms. The last test he did was an EMG. He couldn't believe it that it came back that I have peripherel neuropathy in both legs. So he said we have to do more tests to find out what is causing the neuropathy. I had been diagnosed with fibro and reynauds before seeing new doc. So he sends me for more blood work and urine tests and a cognitive test. Surprise surprise.....all tests came back negative. So I asked him what is causing the neuropathy....he doesn't know. I said we still don't know what is causing my leg weakness right? He says the neuropathy can cause leg weakness and to exercise and to take vitamin e, a b complex, multi vitamin and vit c. But he doesn't know why i can't walk. My legs just won't move.

So a couple thousand dollars of medical bills and no answers. I am so tired of paying doctors to only do what is in their box. Order tests, if they are negative oh well see you in 6 months. Are you kidding me. Don't doctors care that their patient just walked out their door with no answers.

My husband and I are so frustrated. It is so hard to plan anything. I have a scooter but when I have a flare up I am not strong enought to take scooter apart and then put it back together so I end being a prisoner in my house.

I know there are many people in the same boat, living with the pain, etc. I hope you all have loved ones that give you love and support and help you get through your day.

Take care and thank you for listening.

Hi Kallee, I’m so sorry you keep ending up with frustration and no ans… Have you tried Lyrica ? Im sure you have said in a previous post, I can’t think right now.
fibro does directly cause havoc on the nervous system !!! Only there is no absolute test to say yes this neuropathy is caused from the fibro …
Don’t give up !!! We all have to keep searching & sharing what we are learning

Hugs & blessings

Dear Kallee,

I understand how you feel, I went through the ringer with a Neurologist, and besides mild CT all he could say is that I was "STIFF", however, Sjogren's has already come up positive with my GP, so after the second Rheumatologist, I got the Psoriatic arthritis as primary and also added Raynaud's to the Sjogrens' as secondary.

I know that the last thing you want to do is start over with another Dr, but maybe a Rheumatologist can give you better answers. I am so very sorry you had such a trauma. My car accidents were mild in comparrrison, but I have the Spondylitis type of PsA, and it is hitting the spine hard, so I understand the sacrum, tailbone, SI,neck pain.

I do not have one single lesion of Psoriasis, he diagnosed me by my pitted fingernails. The care of my Doctors, and the meds are helping me, though they are still suspicious of MS or SLE, so the brain MRIs continue.

I am wishing you a Dr who can give you reasons and help with your legs. My good thoughts and prayers are with you.


Has your Rheum doctor checked you out for all the many kinds of auto immune diseases? There are at least 80 now and many do either cause joint issues or muscle problems....it would not hurt since all tests would just be mainly easy ones like blood etc.

Have they done a full body scan to look for any possible growths? Could be putting pressure on spine in right area to help you not walk. It need to be one of more advanced so they can see all....like that new machine on Grey's anatomy last week. It showed everything...you might have to fly to hospital or clinic that has it but it at least rule out any physical issues going on in your body. I realize this is long shot too...so just depends on how important you find out what it is?

Here is big question...are they able to treat you at all where they are slowing down the process or enabling you to walk. If they are than that is good and should give them some idea at least what direction to look in....also Genetic testing might help if it is genetic disease that is very rare but they have that gene mapped.

If they are able to treat it....which i am not sure...than i would not worry so much about name. I found in one way they not knowing is good thing since they ruled out MS and Cancer tumors and all serious options that is is a good thing.

My brother was sick all his life and to the day he died they never knew for sure what he had....though they could treat it. So hopefully they can at least treat you as well. I go on some support sites for MS and any other muscle weakness diseases and just ask if anyone has had similar or same symptoms. If you do not know all kinds of muscle diseases you can ask the doctor for few in different areas...or do Google search or just hit MS support site and ask if they know others.

Sad part is many of diseases we thought were not here in US are making come backs due to people not vaccinating or immigrants who never were vaccinated and are here illegally....if you traveled out of country too..you might start searching online for great diagnostic doctor..most likely in teaching hospital like how HOUSE was....who is going to look in all the unusual directions. For sure you want Internist working with you as that is more their specialty, diagnosing.

I would ask on MS sites and again other forums about that kind of great Doctor...there is site that i once found but did not book mark like idiot, who really was best site for locating doctors...as it said about their entire background and practice.

I am so sorry and know how frustrating this might be....but it is good that they did not find anything extremely serious so hopefully it is something very rare that is treatable....or with your Raynaud's you are getting false test readings....might ask about that as auto immune diseases are notorious for causing us to have false test issues. i wish you the best that you find out or something to just help you!

The worst part of fibromyalgia is that it is an "invisible" disability. I can't see it to show you what is wrong with me (as in chicken pox, for example), you look at me and I look fine (as in George Clooney doesn't hold a candle, for example) and even the test for FM is a test of exclusion (as in let's check everything else off the list. Then, and ONLY THEN, will I consider diagnosing you with FM, for example).

FM itself is a test and a gift. The test part comes because having it challenges your resources - will you fight or succumb? Will you bitch/vent for the rest of your life or will you be a beacon of hope for others suffering from this mystery.

FM is also a gift. It challenges you to discover the good in life - to appreciate the things that really matter, like true friends, how wonderful it feels after a flare ends and you can walk through the grass with your shoes off, appreciating the sensation. FM is a gift because it takes away so much and forces you to grieve for the person you used to be. It forces you to appreciate what you have in front of you, NOW, the people who know what a pain in the ass we are and still love us despite the FM. FM is a gift because it forces you to overcome obstacles and by doing so you are stronger.

FM is a gift because sometimes there is no answer. If you have FM, you hear that often and as a result, you can get to acceptance much quicker and without the alligator death spiral that comes with not accepting pain and fatigue.

Ultimately, it comes down to this. It appear that you are going to wake up every morning for the rest of your life in pain. You have two choices. You can fight, fight, fight until you are worn down to nothing OR you can live your life despite your FM. It's there, you accept it and it's limitations and simply do the best you can.

Best of luck - feel better - I'll send a prayer up for you.


I wish you the very best of what life has to offer. I would suggest that your primary doctor be a rheumatologist IMHO

Hi Kallee

So sorry for your frustrating experience. It all comes down to the same thing for us folks--we feel like prisoners in our bodies and homes. I have a take apart scooter and understand your frustration with that as well. I was thinking of putting in for an electronic wheelchair but I am not sure about the cost. Perhaps you could look into that as well.

There are hundreds of diseases that cause bilateral peripheral neuropathy. I do not know where you live but did you ever consider going to Johns Hopkins for an eval? I know a few people who have gone there for different reasons and they are well known for giving third and forth opinions. Of course you would have to pay cash but since y ou have had so many tests, perhaps just bringing those tests would be enough.

Good luck


Great suggestion, Kit!! That was the first place my Internist sent me after that last car accident. At the time, I was not a surgical candidate, that may be changing, but I can tell you the Dr I had was one of the nicest men I have ever met, he took his own x-rays before deciding this, and was very thorough in talking to me.

I may be returning to him. I also hear their Rheumatology Dept is top notch!

So sorry. We get too many dead ends.

Hey Kallee,

Sorry you are having to deal with all that! At least it is not MS which is progressive usually. Do you have diabetes? That can cause Neuropathy. Thank heavens you have a supportive husband. I hope you find out what is wrong.


Susan (energy healing)


wow, the doctors are like that here in Oz as well, perhaps you need to find someone who cares! I sometimes think that when doctors treat us like this we should only pay them on results, no improvement, no money, perhaps then they would make an effort.

just make sure you don’t have diabetes, it’s a simple test and worth excluding, although from your story it does sound like spinal nerve problems! take Care Barb

I so

Marc - you sure caught my attention. It really hit home everything you said, but…at the same time, I think we with fibromyalgia with some secondary conditions are FIGHTERS because we were all vibrant, energetic people before we got whacked with all this pain! FM is a gift that we want to unwrap and find our old selves inside. That’s the gift I want. And until the medical society gets their act together and starts looking at us as someone of value and gets adequate research going to find the answers to help themselves - we are getting sent to see doctors who know little of what we are going through. They want us to give up so they don’t have to see us anymore!

FM is a gift that has made me stronger as my body gets weaker from the pain. What it has also given us hope. Hope that our lives will change again for the better. Don’t give up hope, Kaylee, Marc and everybody. And also, listen to what Marc has to say - we do need to still LIVE while we suffer!

Prayers and extra hope for you, Kaylee. hugs~ Sandi

Kallee, I am so sorry that you have to go through this. "Modern" medicine is kind of a joke isn't it? Well, we all, in our own different ways can feel your pain.

Some day, maybe some day something will break for us in the science and medical world and some answers will arise. SK has an interesting story about hers went from fibro to Sjogrens to Psoriatic Arthritis and Raynauds. Until there are more answers, hold on to hope. Don't give up, know that there's lots of people who care. Hugs.


Hidden in all the frustration is one piece of really good news - no MS. I went through this question after a really bad fall that damaged both top and bottom of my spine. An MRI revealed more than any other test - we found bone spurs, squashed disks,, and more. Has he done an MRI recently to see if nerves are blocked? I think he's stumped on what to do.

I have one leg that doesn't work when tired. I have both walkers and wheelchairs. If your husband can help exercise your legs in the meantime, it will keep the muscles from weakening from non-use.

I appreciate your frustration. First I saw one neuro who tested for seizures (?) and did an EMG. He found an irritated nerve in my neck and gave me a me. Then I was sent to another neuro. I was told one thing by the neuro, then the primary dr got a report that it is all just fibro. What lies! She just didn't want to deal with the complexities of my situation, other than to say that I would be on clonazepam for life. That med was for the neck, but did nothing for the foot drop on one side!

Different neuros have different emphases. I had one that mostly did workman's comp injuries and another that ran an MRI but oly gave explanations. I know what you mean about specialists work in their box and cost $$$. What surprised me is how different neuros work in different boxes.

Try taking those specific vitamins he recommended as they might help with the neurological symptoms.

Also get copies of all his results, for your records! Don't let those test results disappear!

Meanwhile, sweet, understanding hugs,

Susan (Scribelle)

Hi Everyone.

Thank you so much for your advice, suggestions and support. It means so much. I have a rheumatologist that is terrible. But where I live, I can't find one that will work with my fibro. She diagnosed my Reynauds also. After the neurologist diagnosed the periperal neuropoth (in my legs), he ran more tests to find the cause. He tested for diabetes, lupus, etc. All my tests can back negative. He did a MRI on my brain and cervical to rule out MS. No EMG or MRI was done on my lower back. I know that the leg weakness and loss of leg function came from the car accident as it started a year after it. I get a dizzy head rush feeling first, then my legs go weak. I have been to so many doctors, in California, Hawaii, Oregon and Arizona. If they can't figure it out, of course it is all in your head.

It is getting really frustrating spending all this money without getting answers. My husband and I could have gone on a really fun trip. :)

Again, thanks again for your help.

I am so sorry to hear that you are going through all this. How frustrating!

It does sound as if what you are experiencing is radiculopathy - neural effects due to lower back issues? I have spinal damage at the lumbar/sacral and cervical vertebrae, with rotational scoliosis of the thoracic vertebrae. Although I was tested for MS with an MRI, it revealed many spinal issues (but no MS). I have a leg brace on one foot to help with foot drop. It helped when I asked the neuro what I could do to deal with the radiculopathy in the meantime. That''s when I was given the leg brace.

Sometimes doctors need to research the cause, but forget that we have to deal with the symptoms daily. It's good that you have a doctor who is interested in getting to the root cause (pun not intended). Asking what can be done in the meantime brings them back to your daily reality! I had to directly ask, if that helps!

Gentle hugs,

Susan (Scribelle)


Absolutely! I agree that we must fight. However, I do not agree that doctors, in general, know little of what we are going through. If you have FM, chances are at some point you will be sent to a rheumatologist. I know that over the past twenty years, rheumatologists have been overwhelmed by FM patients because every other type of doctor tells people they suspect of having FM to go see a rheumy. And guess what? The non-rheumy doctors that now characterize every person with fibro-like pain as FM, rheumy's are bearing the brunt of dealing with FM and non-specific-generalized-pain that is NOT FM. It is problematic that GP's, Internist and every other non-rheumy doctor are not doing their jobs.

This is the reason that many rheumy's are getting burned out and more important and more frustrating, less and less medical students are choosing rheumatology as their speciality of choice. I've talked to my rheumy about this at length and he said twenty years ago, he would treat five FM patients a week. Now it seems like he treats five non-FM patients a week.

Now, think about this - if you are a doctor and the vast majority of the patients you treat likely have a condition that 1) you can't explain to the patient why or how they got it, 2) there is no universal treatment that works for even a majority of people with FM, 3) there are something like twenty different things that combine to make up each persons' FM - so even if you have something that worked for patient A, it likely WON'T work for patient B and 4) THERE IS NO CURE.

The best thing a doctor can do is to admit they do not have all the answers and to take advantage of the use the FM community - sites like this, local support groups, hospital education centers, NIAMS at HIH, even other patients from that doctor who are able to insert FM into their daily life. This is not an easy issue here, folks, not for us and not for the doctors.


  1. EDUCATION, EDUCATION,EDUCATION - I suggest NIAMS @ NIH, or the Mayo Clinic,
  2. Do whatever you can to keep you weight in check. If you are an emotional eater and feel yourself giving in, try Weight Watchers or perhaps visit a nutritionalist.
  3. EXERCISE. I am not talking about running a marathon, but movement is crucial. You're body is not designed to NOT MOVE. If you barely move, that will be your future. Think of movement like moving a sponge. If you have a dry sponge, how easy is it to bend? When you move, you get the blood flowing throughout your system and you wet the sponge. It is much easier to bend a wet sponge, right?
  4. SUPPORT GROUP - you need to be around others who have gone through this so you can assess where you are, ask questions, seek affirmation, ask for resources, etc., If you have access to a local, face-to-face support group, some of those are great too.
  5. Try to include your family and co-workers because, well, they are family and co-workers and it is better if they have a working understanding of what you are experiencing.
  6. I would also suggest having a one or two sentence description of FM, so when an ignorant aunt asks why don't you date dearie, your response could be "I have a central nervous system disorder that makes it hard for me to jump off cliffs or go to work. HAHA! Seriously, the bottom line is that it makes very easy activities very hard or impossible. Apologies if that poses problems."

Anyway, that is enough lecturing for now. Just know that there are ALWAYS THINGS YOU CAN SAY THAT WILL WORK IN A MYRIAD OF SITUATIONS (more to come).


Thinking of you, hoping that you have found some answers and that your life can make a turn for the better very soon!

Big hugs,


Can you emphasize that it began with a car accident and ask that he check for damage to your lower back? Has any doctor done this yet? It sounds like they're looking at the wrong end of the spine...

I totally agree. My neurologist thought I had MS so he just kind of shut down after my results were negative. I have had a lumber MRI - hence the 2 level fusion in my lumbar. But I haven't had an EMG on my lumbar for a very long time. My rheumatlogist is worthless. She will refill my prescriptions but that is all. She barely gives me 7 minutes of her time. My neurologist wasn' t much help except to diagnose the peripherel neuropathy. He did tests to figure out the cause.....everything came back negative. I asked him if it was from nerve damage and he said no because both legs have it at the same level. Which he said was pretty bad...very slow response time. I don't have diabetes, lupus or anything else. Just the fibro, neuropathy and Reynauds. If you push on my right side sacrum it will make my legs not work. When I told the doc he just kind of shrugged his shoulders. He said the neuropathy can cause leg weakness but not loss of function. The loss of function is scary because it comes and goes. Sometimes it can last for days. It is hard to plan things....of course when I have a flair up my pain level goes up.

Anyway thanks for all your support and advice. It really helps. Marc's advice about weight control, exercise, etc. is very helpful. Also, I know not eating wheat, sugar, dairy can make a big difference.

I haven't tried Lyrica because of the weight gain side effect. I am on Savella and tramadol, and hydrocodone. I tried gabepentin and it didn't work at low doses and the high doses made me disoriented. Not good.

I am a very blessed person, yes I hurt like hell, yes I am exhausted all the time, but there are so many people worse then me. So I enjoy my good days, and have a down day on my bad days. I have a therapy dog and we go to the library and the kids read to him. It is nice to see the kids improve their reading and they love my Sammy. It is a good way to keep the depression away. It is hard keeping my weight down and when you don't feel good it is hard to exercise which doesn't help losing weight. Then with weight issues, it makes you feel worse physically and mentally. So we all need to do the best we can, take one day at a time. Massages help too!!!!! Find one that will work with you. The good ones just want to help so if you don't have lots of money, most will work with you.

Take care of yourselves. Gentle hugs. Thank you all. You are all so kind to someone you don't know.

It means so much.


Hang in there! You are in my thoughts and hopes today!

Warm hugs,

Susan (Scribelle)